Cracked: Inside the broken mental health system

Michael Martin, of Cape
Coral, struggles each month
to come up with the money to
pay for the medications that
would help ease the symptoms
of his mental illnesses.As executive director of NAMI of Lee County, Kathy Sager
often is put in the diffi cult position of turning away people who
are desperately in need of medication and treatment because
there simply isn’t enough money to go around.

Erik Kellar

Michael Martin hasn’t slept through the night in almost two weeks. The 45-year-old Cape Coral man—who at six feet, four inches tall and 380 pounds is the size of a professional wrestler— has been screaming at strangers and nervously gnawing his fingernails. Recently, he found himself sobbing uncontrollably while watching a reality television show.

This isn’t how Martin wants to live. And with a little bit of help, it isn’t how he has to live.

Martin suffers from a slew of mental problems—anxiety, manic depression and bipolar disorder. He needs a daily dose of pills to stay stable, calm and healthy. But he’s been without them for close to two weeks because he simply can’t afford the cost.

“When I’m on the medication, I’m a laid back person,” he says. “But when you come off it cold turkey, it messes with your mind. You have crazy thoughts and get very emotional. I’ve gone into that negative, critical, sarcastic mode.”

In 2010, a car accident left him with a paralyzed left leg and short-term memory damage. He could no longer work in pest control. Eventually, he found himself broke, homeless and depressed.

Since he is unemployed and living in supportive housing for people with mental health issues, Martin needs only $25 a month for medication—thanks to deep discounts from drug companies and pharmacies. He’s just one of thousands of people with mental health problems in Southwest Florida who need a small amount of money to remain healthy, but still can’t afford it.

When you live in Florida, where money for mental health is incredibly scarce, sometimes people like Martin don’t have much of a choice.

All they can do is try to hold things together as best they can and hope that life will get better.

Mental health issues are not an isolated phenomenon. About 60 million Americans, or one of every 5.2 people, experience a mental health condition every year. That translates to nearly 3.7 million Floridians, but the state ranks nearly last in the country—49th of 51, including Washington, D.C.—when it comes to government funding per capita for mental health care. Mental health leaders in Southwest Florida struggle and commit themselves to finding people affordable medication and counseling because they believe the community will ultimately benefit with each person they help.

But they can’t save everyone.

Lack of funding makes it difficult. And the ripple effects aren’t just felt within a tight-knit community. Local jails have large populations of mentally ill inmates, many of whom might not have offended if they were properly medicated and in therapy. Emergency rooms are also inundated with people suffering from mental illness, leaving taxpayers to foot the bill.

There are many people like Michael Martin struggling to afford the pills that make them stable again. Some cut their pills in half to make them last longer, although proper dosages are critical for many psycho-therapeutic drugs. Others donate plasma for cash to help with the cost. Martin had been visiting a plasma center so much he had to stop because it was making him sick.

But now, without his medication, he feels even worse.

Battling to Help

Kathy Sager, executive director of the National Alliance on Mental Illness Lee County Inc., is one of many community advocates who realize if those with a mental illness don’t get their medicine, some—but not all—can become suicidal or dangerous.

So Sager and other professionals in the field try desperately to save lives despite severe limitations of funding and a general lack of desire on the part of the community to help.

“I know right now, between all of the mental health agencies, our funding has been cut,” she says. “But every one of us are calling each other to see if anyone has funding to help get medication. There are situations where I just can’t help them and it’s so heartbreaking. I’m playing with someone’s life.”

She even receives requests for guidance from hospitals, which have much bigger budgets than her organization. Almost daily, she calls pharmacies, doctors and fellow nonprofits, begging for miracles.

On average, $20 would help care for someone’s medicines for a month, she says. Still, she often has a waitlist of people in need.

“They say one person can’t make a difference, but one person can make a difference,” she says. “Even if I have to take it out of my own pocket, I will.”

NAMI of Collier County struggles as well.

“If someone calls and says, ‘My electric will be cut off next week,’ and then five minutes before a mom says she can’t have her medication filled because she needs to get groceries, which do you choose?” says Kathryn Leib-Hunter, executive director of NAMI of Collier County Inc., asks. “I come across a problem like that once a week.”

Scott Haltzman, an adult outpatient psychiatrist at the David Lawrence Center in Collier County, says the general theory is that most mental illnesses are caused by chemical imbalances in the brain. The intent of the medicines is to help regulate the imbalances so behavior and mood improve.

If someone suddenly stops taking the medicine, that person could go through withdrawal symptoms like irritability, sleeplessness and sadness and the risk of relapsing worsens. Haltzman says, for example, there is a 90 percent chance people with bipolar disorder will relapse if they go off their medication.

Leib-Hunter says if there were more money available to allow people to see a doctor and get treatment for free, then “we would all be in a much better place.”

“Otherwise, hundreds of people fall through the cracks,” she says.

As executive director of NAMI of Lee County, Kathy Sager often is put in the diffi cult position of turning away
people who are desperately in need of medication and treatment because there simply isn’t enough money
to go around.

A Patient Becomes an Advocate

Dana Foglesong’s mind races like a broken rollercoaster— fast and always at risk of running off the tracks. Sometimes her thoughts are peculiar, to say the least. On this particular day, she wondered what it would feel like if she rammed her car into a nearby truck while driving on I-75.

Foglesong has been on more than 45 medications during the past decade, and it seems her diagnosis changes with the weather. Her most recent one is major depression with psychotic features.

But if you met her, you would never guess that in her 20s she was shuffled in and out of mental health hospitals where doctors labeled her as a threat to herself and to others.

“I was the person in the corner drooling,” she says. Today, her life is quite different.

She’s a tall, confident, 31-year-old brunette with one of those friendly personalities that seems to have its own gravitational pull. She credits her recovery to peer support, hard work and to educating herself on how to manage the disease. Yet she still struggles with her illness daily.

Foglesong works in the Southwest Florida mental health community, volunteers and sits on the State Substance Abuse and Mental Health Planning Council in Tallahassee, where she, along with others, tries to persuade state officials not to cut funding for mental health.

She would like to lobby for more money to help support mental health programs, she says, but often they have to fight hard just to keep the status quo. In some ways they’ve failed even at that. When adjusted for inflation, funding has actually fallen per capita in the state during the past decade.

“Mental health is an essential part of a person’s well-being,” says Foglesong, a Fort Myers resident. “To pretend otherwise is foolish. Not funding services is negligent.”

She continues to fight because she knows firsthand if those with mental health issues are treated early, they can be saved a lifetime of difficulties.

But advocates don’t have lots of faith any change will happen in the near future.

“It’s always been the first thing cut because there’s a stigma attached,” says David Schimmel, chief executive officer of the David Lawrence Center, the only non-profit mental health treatment facility in Collier County. “I can’t have pictures of cute little kids on ponies that tug at your heart strings.

“There are other states in the country where 100 percent of the mental health system is funded by taxpayers. For us at the center, about 40 percent of our total budget comes from the state of Florida, which is really pretty pathetic.”

State Rep. Matt Hudson, R-Naples, who sits on the House Health Care Appropriations Subcommittee, says he worked hard over the past few years simply to keep the mental health funding stable, while the Florida Senate wanted to eliminate the funding entirely. The bruised economy has definitely made an impact on how much money the community gets from the government, he says.

“We can only allocate what the taxpayers give us,” he says. “When people are unemployed and there are challenges, you have limited resources to work with.”

Advocates say with more treatment available perhaps we could avoid events like the one in Newtown, Conn., where Adam Lanza killed 20 children and six adults at Sandy Hook Elementary, or in Aurora, Colo., where James Holmes opened fire during a crowded midnight movie premiere, killing 12 and injuring 70.

The only time mental illness gets national attention, Schimmel says, is when tragedies occur. But the attention cuts both ways, causing many people to believe those suffering from the disease could be violent. National research has shown that those with a mental illness are more likely to be a victim of a crime than the perpetrator. Lanza, the 20-year-old shooter who killed himself after the murders at Sandy Hook, has been reported to have had a mental illness.

“Somehow we failed this kid … I can tell you we all have kids like this in our community,” Schimmel says.

“They are shunned by their peers, isolated because they are different, and their issues go untreated.”

Dana Fogelsong is an example of how proper treatment can make a difference. With her symptoms under
control, she works to help maintain state funding for mental health care.

Stage an Early Intervention

To Schimmel, and the rest of the mental health community, mental illness is like any other health condition. As with high blood pressure or cholesterol, it can, if left unchecked, cause serious issues. But if treated, people who suffer can live healthy lives.

One of the goals of the David Lawrence Center is to find these children and stage an early intervention so they can grow up to lead productive lives. The center works to keep “people from having a minor illness become a major illness.” And though it reaches more than 30,000 people a year, the center, Schimmel says, isn’t even close to meeting everyone’s needs because there’s simply not enough money.

With nowhere else to turn, some of those who suffer from mental illness wind up in the wrong places—emergency rooms.

NCH Healthcare System sees many repeat mentally ill patients, including one person who was admitted 26 times in six months, says Susan Kimper, director of psychiatric medicine at the hospital.

According to statistics provided by the David Lawrence Center, an average emergency room visit costs $2,887, while the average cost of a crisis stabilization bed if being treated in a behavioral health facility is $92.

“People who are uninsured have nowhere else to go for services, and the community at-large ends up paying for them,” Kimper says. “We are really starting to look at this as a community issue, not an NCH issue. What can we do to help instead of saying, ‘Why do these people keep coming back here?’” Others wind up in jail.

Lt. George Welch of the Collier County Sheriff ’s Department oversees the department’s Crisis Intervention Team, consisting of deputies who learn how to recognize symptoms of mental illness so they can de-escalate whatever situation they encounter and get the people the help they need. The main goal of the CIT is to keep those with mental health issues out of jail and find them proper treatment.

In December 2012, 154 inmates in the Collier County Jail, or 18 percent of its population, were treated for some type of mental disorder. That number is abnormally low compared to the national rates. The U.S. Department of Justice estimates at least 64 percent of local jail inmates,

56 percent of state prisoners and 45 percent of federal prisoners have symptoms of a serious mental illness.

Keeping the mentally ill out of jails isn’t only good for the person involved, but for the taxpayers as well because treatment saves money, Welch says. The average annual prison cost is about $55,000, while the average annual cost of treatment is $2,400.

“There are more people with mental illness in every jail in every county than in institutions,” Welch says, noting that one of the state’s largest treatment centers for mental illness is the Miami-Dade County Jail.

One of the reasons for the high number of mentally ill inmates is because of deinstitutionalization. In the 1960s and 1970s, state mental hospitals discharged people with severe illnesses without ensuring they received proper rehabilitation services and medication. Many of those released weren’t able to find jobs, ended up homeless and eventually landed in jail.

But if they would have received proper treatment in the community as everyone had hoped, they likely wouldn’t have landed in prison.

Daleen O’Dell’s son has been arrested more than a dozen times. The Cape Coral mother admits that some days knowing he was behind bars actually relieved her.

“At least I knew he was safe. He was eating. I wasn’t worried where he was,” she says of her son, now 35, who has been homeless before but now lives on his own with help from his mother. O’Dell asked that Gulfshore Life not publish her son’s name for fear it might cause him further harm.

While the thought of knowing he was safe gave her comfort, O’Dell knew he didn’t belong in prison, and she was angry because some of the times he was incarcerated, he wasn’t taking his medication.

She calls the mental health system in Southwest Florida “broken” and says it should be set up so those with a mental illness don’t need their loved ones to serve as advocates night and day. Right now, she says, the mentally ill who don’t have people rooting for them can get lost in the shuffle.

“As a parent you think, ‘We are going to fix this and make it go away,’ but it won’t. So then you say, ‘I have to try to make the community they live in better,’” she says. “I always wonder if something happens to me, what will happen to him?”

Schimmel says that everyone is doing the best they can with the resources they have. The local organizations work well together, and leaders understand how much more cost-effective it is to help those with the disease as early as possible.

But, unfortunately, Schimmel says, the state legislature, “doesn’t get it,” and neither do some members of the community.

“I think what’s missing is communities like ours are reluctant to begin a dialogue about mental health treatment because it’s not a sexy topic,” he says. “But if you look at leaders like myself, who have been in place for 20-plus years, we are all under tremendous pressure to meet increasing demand. ... They are credible people who have done a great job. There are certain leaders in the community that get it.”

That’s why, Schimmel says, “there is hope in Collier County.”

And hope is rooted in Lee County as well.

Another challenge for Southwest Florida is giving those with a mental illness a safe place to go during the day instead of leaving them isolated at home.

Some have found that place to be the HOPE Clubhouse.

Just three years old, the clubhouse sits off Broadway Avenue in Fort Myers, where more than 150 people have walked through the doors in search of friendship, responsibility and a sense of purpose. The clubhouse doesn’t focus on the mental illness, but instead zeroes in on putting these people back into the workforce.

The work starts at the clubhouse. The members are the ones who answer the phones, cook the meals and clean the building. Then, when the members are ready, the clubhouse helps them find jobs in the community.

Debra Webb, HOPE Clubhouse executive director, has put 62 people back to work—people who never believed they would work again. And she’s helped others return to school to pursue degrees.

The clubhouse, which people join by choice and is not mandated by a doctor or a court, believes in recovery through work because it helps members regain their self-confidence, she says. There are 350 clubhouses throughout the world and 10 are in Florida. The work the clubhouse is doing has paid off. Webb says she notices that those who visit the clubhouse regularly are less likely to fall into a depression.

“The members are not rotating in and out of crisis beds like they used to,” she says.

If the area had more services such as this one, perhaps more people could be saved from relapse, she says.

Gina Britton is one of those people. Britton, of Cape Coral, was a civil engineer and a single mom of three when the depression she suffered most of her life left her so debilitated that she quit her job, isolated herself and thought about suicide daily. The 44-year-old has tried 75 different kinds of medications, she says, and is still searching for the right one to curb her despair.

Britton finally mustered the courage to leave her house after hearing about the clubhouse, where her duties include bookkeeping and helping other members with the complicated Medicaid forms.

Life for Britton feels good again and, though she is still struggling with her mental illness, she is learning better ways to cope.

Now that she’s stronger, her focus is helping others who feel lost and alone just as she once did.

She’s contacting state legislators, asking them to increase funding for mental health communities because they would be saving lives, just as the clubhouse has saved hers.

“Now it’s getting to the point where I worry about my kids. Depression runs in my family,” she says. “I want better for them.”

So Britton will hold onto hope— hope that there will be more clubhouses and more people like the ones in this story to support her children if they ever need it.

She will stand among the other staunch champions for the mentally ill, married to the cause they so passionately fight for.

Believing that one day, perhaps, they won’t have to fight so hard anymore.

RESOURCES

For more information on mental health programs available in Southwest Florida, contact these agencies: